Archive for the ‘Szajnuk Family’ Category
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The Szajnuks and the Undiagnosed Diseases Network (UDN)
Today is the one year mark for us with the Undiagnosed Diseases Network (UDN). Our applications landed on their desk last December, 21st, 2015. We are so very...
Praying for a Christmas Miracle – a diagnosis, treatment & cure: Undiagnosed Diseases Network visit next week
This is a special time of year for holiday fun. This is a time for making gingerbread houses with your classmates and attending your children’s holiday concerts. Unfortunately,...
Fox 13 News: “Undiagnosed Day” highlighted in Utah for the first time by Tamara Vaifanua
POSTED 7:40 PM, APRIL 29, 2016, BY TAMARA VAIFANUA SALT LAKE CITY – Gov. Gary Herbert declared April 29 Undiagnosed Day. For dozens of Utah families, it’s a...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy
Lucy Szajnuk is four years old and lives in pain every single day. I was glad to hear that she did not have papilledema like Ava did in...
Lucy Szajnuk’s Dog Attack: Rare and Life isn’t Fair: Open Letter regarding a NO DOG policy on all Soccer Fields in Park City, UT
My role in life is to advocate for my three children that are currently living in the medical world of the unknown. Our family lives on the sideline...
Whole Genome Sequencing for the Szajnuks through the Utah Genome Project
Gina Szajnuk: “August 6, 2015, was a day I will never forget. My family had their blood drawn for whole genome sequencing. This is something we have been...